Hi Lulu,
I know it’s just a guideline - but I’m a statistician and love numbers! But my prognosis on Adjuvant is 15% lower than on Predict!! I’m obviously not going to make any decisions based on this - but was just wondering if everyone else’s stats were completely different on the different tools. Just out of interest really… But sounds like Predict is a bit more optimistic in general. It looks like they’re bringing a new adjuvant out soon. I’m hoping that will include Herceptin.
Thanks,
x
I can’t comment on the pros and cons in the tools in breast cancer, but I do know that every treatment benefit/risk tool has limitations and that is why you get different scores. Best to let your oncologist use the one they are happiest with as they can use and interpret that one best for you.
Problems include the fact that if you are looking at say 10 year survival rates, the patients 10 years ago may have been treated in different ways to today e.g. sentinel node biopsy, newer chemo drugs, different doses. So there is always a fudge factor.
Also in general the more facts they have about you (lifestyle, family history etc as well as BC pathology) the more accurate - but its also more complicated to use the tool.
I’d just say to anyone contemplating chemo or no chemo… or if you want to know why you haven’t been offered chemo - ask for the survival stats (but make sure you are mentally prepared to hear them) with and without treatment - then you can see how many lives are saved by treatment.
Of course you never know which one of the stats is “you” its all probability.
Sandy the new version of adjuvant has been in the process at least since I was diagnosed in 2009 but might even have been there since 2006!
Predict is updated now with HER status. You can find out the data it is based on in the information section, it is based on more recent UK patient data. My team here used Adjuvant last year to illustrate my stats.
I’ll say what I’ve said before on here when people have been given the choice.
You don’t know how you are going to be on chemo - so why not give it a shot and see how you react, you can always stop.
Personally if it were me, I’d not want to do it, I was scared most of chemo, but I’d still do it again if I had to because of how much it can help with micro cells that others can’t always get.
I didn’t have an easy time on it but it was doable just miserable at points with pain and not being able to eat etc.
A couple of people have suggested that you can stop the treatment if you want/need to which hadn’t occurred to me at all. I’ve just had a chat with my GP who also felt it might be better to have it.
I know that if there wasn’t the consideration of serious long term side effects I wouldn’t hesitate, but hearing from people who’ve had a recurrence has reinforced the fact that I am willing to do anything to try and avoid that, not just for myself but for those who care about me the most.
My appointment is next Tuesday and I already feel more mentally prepared for making the decision once I have all the information I need from the Oncologist.
Thanks everybody! This forum has been ever so helpful for me, but I do get upset sometimes reading about what we’re all having to cope with. It’s so sad. None of us deserve it do we!
Dawn
Dawn/Lulu
My BCN said your cancer is unique to you and your recovery is also down to you and how you react to it.Treatment is worked out on %s and risks etc.If I wanted a more individual test ,I could go for an ONCO DX test but they’re arn’t done on the NHS.It has to go to America and cost about £2OOO and whatever way I look at it it’s still an equation worked out on risk factors.I read on the test website that for my type of cancer (ER positive lymph node negative,grade2)that there is only 10%chance of additional recovery with chemo over hormonal therapy(tamoxifen or similar)so when I consider that against the possible side effects ,it’s not enough to encourage me to ask for it .
Looks like I won’t be offered chemo anyway because of the size of the tumour (marker is 4cms)but will wait to speak to Onc next week.Chemo is for blood, radiotherapy for tissue,I believe and, as I had several tumours but no lymoh nodes affected,I would prefer they considered radiotherapy ,which they are now prepared to do.Last week Onc said no need for either of them.Will know for sure at next weeks appt.
Carole
Obviously it is your choice as you are the one who has to deal with the consequences with either choice. I rarely offer opinions when people are deciding whether or not to have chemo as I was simy told I had to have it. However, I guess you do want to hear opinions - and I think an additional 10% on your prognosis is MASSIVE and probably higher than many others have done chemo for. I know one girl who did it for an additional 2% benefit. That means that one out of ten women with your cancer would die without chemo.
And don’t forget that cancer can travel via your blood supply too - not just the lymph.
However, discuss all with your oncologist and I am sure you will come to the right decision. Don’t be scared to ask for a second opinion. Unfortunately that’s what it is - an opinion. It’s not an exact science and I’ve been amazed at some of the different opinions I’ve had.
Good luck with it all from someone who found chemo pretty easy!
Thanks for opinion sandytoes,
I’m taking it all on board but I don’t think it’s going to be offered anyway because of the tumour size
but thanks anyway.
Carole
Carole usually if there is a 3% benefit or greater you are strongly encouraged to have Chemo… On the predict and adjuvant tools you would have around a 4-5% benefit… so you may find that it is actually offered to you.
Lulu x
Thought I’d just drop in, as I had the Oncotype DX test done. My situation was not straightforward either, bilateral, lobular, 3 in total, biggest was 2.2cm, and clear nodes. I had WLE’s although recommended Bi Mx, and had good margins. I wasn’t offered chemo - happy about that but not convinced when I read some reports which placed me right in the middle/grey area. Fortunately my nice sister paid for the test, and I was only charged for one, but had two tests. I don’t know too much about it but I do think its quite different from the tests the NHS does and is specifically targeted at those with hormone positive/clear nodes (although I think the thinking on this is changing). My result was that chemo would be of little or no benefit, so it has eased my mind on that one, and has allowed me to move on just a bit more. I don’t think it is as valid a test for multiple tumours as it is for single, but it has still given me a bit of peace of mind.
Its a rotten decision to make, but I think if I hadn’t had the Onco test I’d always be wondering if I should have pushed for the chemo.
Good luck
S
Lulu and Sheil
Thanks for your advice.I was grateful that at least one specialist had changed someones mind and agreed to consider radiotherapy.We’ll see what is offered on the 7th Dec .
Thanks girls for your help
Carole
hi just reading the comments.
sandytoes how come the girl you referred to with 2% benefit from chemo was offered it. just going on what lulu said about 3% or more then is offered. don’t understand all these variations between who is offered it and who isn’t. is it down to onc really and some offer it no matter how small percentage is or what. am worried about all this who does and who doesn’t. i want to make i get best options/treatment explained so that i can decide.
not had any meetings yet just had op.
thanks for any comments
Hi Dawnrise, am going through the same dilemma. Think I have made the decision to have it but am going to talk to a someone who had chemo who has been contacted on my behalf by BCC to help make the decision. Do you think this might help you too? I am going to phone onc on Monday with my decision. Keep in touch, we could support each other if we have it at the same time.
Hi Shadders
Why didn’t I think of that myself? I just checked and there’s a local support group meeting next Wednesday, the day after my appointment with Oncologist. There’s bound to be some women there who have been through it. I will keep in touch. Thanks ever so much for your suggestion.
No Problem Dawnrise and good luck on Tues and Weds. I’d be interested to hear what the support group is like as we don’t have a meeting till Jan so haven’t had chance to go yet.
Hi everybody
I had my appointment this morning with the oncologist and I am going ahead with chemo. The way it was explained is that with having nodes clear and a good margin I was ‘probably totally cured’ now. But by having the chemo as well as everything else I would ‘very probably cured’. He offered to explain all the statistics but I accepted his opinion that there was a definite benefit for me in having it. He was very reassuring about long term side effects. And I don’t think I’d be comfortable taking a chance that there could be some micro cells lurking around and I haven’t done everything to get rid of them. Although I do still realise there are no guarantees.
So 6 FEC coming up. Then 3 weeks rads and 5 years tamoxifen.
The BCN will call me tomorrow with some dates.
I won’t be going to the support group tomorrow as they are having their Christmas lunch. But I did get a text today asking me how I got on. I’m constantly overwhelmed by how wonderful people can be.
I expect I shall be joining the December chemo thread so perhaps see some of you there. XXXXXX
Hi Everyone
i have appointment tomorrow pm to discuss results of my op on the 29th nov. I too am wondering about chemo as I was told earlier that i may only need rads. Reading through this thread has helped make things clearer because I always though that you automatically had chemo. I have had several friends with BC and they have all had chemo and rads. xx
Well folks
Finally got my answer that I’m happy with.Saw Oncologist today.
No chemo,no radiotherapy just 1mg daily of Arimidex.Oncologist is quite an authority in his field and has pioneered,as part of a team, different methods of applying radiotherapy including directly onto tumour area at surgery stage,thus reducing damage to skin etc.
I felt a lot happier when he told me that radiotherapy would not benefit me whilst I have no lymph node involvement.Usually has to be more than 4 involved,or poorly differentiated tumour or advanced tumour with skin involvement.
Also chemo not recommended as I’m 85%ER positive,20%PR positive and HER2 negative,also node negative and post menopausal.There would only be less than 1% chance of an improved outcome but there’d be more chance of SE’s.So could comfortably punch the air as I came out.
Need to research Arimidex now
Looks like a good decision to get immediate expander after mastectomy because hopefully won’t need much more surgery.
Carole and Dawnrise glad you are both happy with your decisions… Sounds like you both had some good input from your consultants … Lindyloo hope you had a successful apppointment with yours too and feel happy with th outcome…do come back and let us know about your treatment plan too.
Lxxx